A PICC line is a Peripherally Inserted Central Catheter. Many chemotherapy patients have a PICC line put into their arm to make it easy to draw blood and give medicine without constantly pricking the patient. It's great. The downsides include living with tubes sticking out of your arm and also the slight risk of infection at home. The PICC line dressing needs to be changed each week. The PICC Line even has its own sterilized cleaning it. It is serious business! There is nothing really holding the PICC line in besides the dressing so it is critical that the dressing is done properly. My mom has had a PICC line in her arm since her first admission into the hospital. They took it out when she left St. Josephs, but put it right back in again at City of Hope. She has never had any issues. This last time, however, she felt some irritation when the nurse cleaned it. The irritation just recently turned into a blister about the size of an inch. The triage nurse on call at City of Hope does not think it is a big deal, but since my mom's white blood counts are dropping and infections are harder to cure, I emailed her doctor to check if we should do something about the blister. We went to a chemotherapy class a few weeks ago at City of Hope and the nurse emphasize that nothing is ever too small for chemo patients, so we are giving everything, even a 1 inch blister, attention!Below is a photo of the PICC line and dressing right after my mom had it put in. They also gave her a waterproof arm cuff to wear in the shower. Apparently some people also take it swimming!
Electronic Personal Health Record
Five years ago, I worked at Google on the Google Health team. Google Health was a Personal Health Record product. It was retired in 2012. The Google Health team wanted to find a way to use its talents with information, connecting people and technology to empower users with electronic ways of managing their own personal health records. There was as lot of healthcare and tech talent of the team, many who were very passionate about healthcare. Some of this passion came from having to go through the healthcare system themselves and handed stacks and stacks of paper. Today, five years later, we are still handed stacks of paper. It is so easy for me to go electronic with my credit card company and even my healthcare insurance company. Everything is electronic - bills, insurance claims, notices, etc. However, the medical record itself still lives in the world of paper. While working at IBM on teams that build data warehouses for hospitals, I got to see first hand the plethora of data that hospitals store on their patients. This data is stored in systems like Epic and Meditech. The major hospitals have Electronic Health Records. However, the link between those electronic health records and patients' access is still broken. There are many start-ups now trying to solve this problem.For now, I am trying various different Personal Health Record (PHR) tools. The product of choice at the moment is No More Clipboard, recommended by an IBM colleague. The user interface is not great, it is not intuitive or easy to add new medications and procedures, but is most certainly is better than nothing! The entire time I am adding my mom's medications, chemotherapy schedule and procedures, I can't help but think: "All this stuff is already in a database! Why can't I just 1) have access to them directly on the provider sign or 2) have them pushed to my profile?!"I have always been very passionate about healthcare IT, but having a personal experience with something as involved as cancer, I now truly understand the urgency and passion from some of my past colleagues.
HLA Typing - Sending Blood Abroad!
Thank goodness for siblings! My mom has 8 healthy brothers and sisters. This means lots of blood tests and Human Leukocyte Antigen (HLA) typing to determine a stem cell match. Each sibling is required to provide two very carefully labeled tubes of blood. Each tube is 10cc, for a total of 20cc per person. Since five of the siblings are in Vietnam, the HLA Typing lab in California sent five testing kits to Vietnam. Each kit has 2 tubes, 1 Instruction Sheet and 1 "Return of Specimen" form. The forms are included in this post. If the tubes are not properly labeled, the blood is rejected. There are specific instructions to not cool or refrigerate the samples. The samples are required to make it to the HLA typing office in less than 7 days. I called our family to translate all the instructions. All five siblings met at the hospital to have their blood drawn but left to go home for the following reasons:
- The clinic's office said they need to go get cooling gel to keep in the packages to keep the blood cold. This is incorrect. Must be at room temperature!
- The contacted the local post office and they refused to send any blood. They then asked FedEx and DHL. Both carriers only allow blood samples from one specific hospital in Ho Chi Minh City. So the siblings would have to go there to get their blood drawn and FedEx would have to pick it up.
We cleared up all misunderstanding! Tomorrow, my aunts and uncles will go to the main hospital in Ho Chi Minh City that has partnerships with FedEx and DHL. After getting their blood drawn, they will label everything and return everything properly packaged via overnight mail back to the United States. It has been a very interesting experience of translating and learning about localization and shipping rules in each country!Mailing Instr - HLA Testing kit - Current-Blood Return of Specimen FormReturn of Specimen Form
CNS prophylaxis - preventative measures for the CNS and Brain
When my mom first got chemotherapy, we were told that at one point, a CNS prophylaxis would be done. This is chemotherapy given to the central nervous system (CNS) as a preventative treatment. A lumbar puncture (also known as a spinal tap) is performed and chemotherapy is inserted into her spine. The reason they do this is because there is a barrier that prevents normal chemotherapy from entering the spine and brain. I guess "Go Brain!" for protecting itself. Our first doctor, Dr. Grant Lewis, indicated that most times with Adult Acute Lymphoblastic Leukemia patients, a CNS prophylaxis is done even if no cancer has been detected in the brain or spinal cord. It is for preventative measure since cancer presence in the central nervous system is quite a critical affair.My mom was originally scheduled to have the lumbar puncture and CNS prophylaxis tomorrow. However, presence of blasts (bad white blood cells) in her peripheral blood stream has halted this procedure. The team of doctors at City of Hope have "concern of seeding the CNS ( due to presence of leukemic blasts in Peripheral blood)." Also, Hyper CVAD Part B includes two drugs, methotrexate and cytatabine, that enter the brain and CNS, so the CNS prophylaxis is not currently needed. She will have her CT scan on Friday and will be admitted for her 2nd round of chemotherapy on Monday. While all this happens, her siblings will be tested for stem cell match. If there is a match, the transplant will probably happen in 2 months, after chemotherapy cycle 2 (called Hyper CVAD Part B) and satisfactory remission.
Heme and Non-Heme Iron
One of the many side effects of chemotherapy is anemia. Since the chemo is killing all blood cells, good and bad, the body oftentimes does not have enough red blood cells (RBC). When the hemoglobin level reaches below 8 g/dL, my mom needs a blood transfusion. Therefore, I looked up foods that might help with keeping her hemoglobin at a somewhat normal level, which is 12-15 g/dL in adult females. This was when I learned about Heme and Non-Heme iron. There are many different kinds of food that contain iron. The heme type is more easily absorbed by the body. This type includes chicken liver, clams and beef. The non-heme type includes the veggies, beans and cereal. We have to balance this list out with what is actually good and not good for a chemotherapy, cancer patient! No wonder the hospital provides dietitians. There so many different factors to a chemo patient's diet!
| Heme iron | Non-heme iron | |
| What is it? | Heme iron is found in foods that contained hemoglobin – animal foods including red meats, fish and poultry. | Non-heme iron is the form of iron found in all other, non-meat based foods. |
| Iron sources in food | A serving of chicken livers, clams, or roasted beef tenderloin contains all the iron you need for a day. | Non-heme iron can be found in vegetables, grains, iron-fortified breakfast cereal, lentils and beans. |
| Iron absorption | One of the biggest benefits is that heme iron is absorbed better than non-heme iron, andits absorption isn’t affected by anything else you eat. We absorb approximately 15-35% of the heme iron we eat, which is a lot! | Non-heme iron is not absorbed by the body as well as heme iron. Only 2 - 20% of non-heme iron is absorbed. |
City of Hope Day!
It is the long awaited day of our City of Hope appointment! City of Hope is ranked as the #15 best Cancer Center in the United States by U.S. News Rankings and is also one of the NCCN's 23 hospitals.To get to this day, my mom went through 25 days of inpatient at St. Joseph's in Savannah, braved nadir during her first round of chemotherapy without getting sick, got successfully discharged and flew the 4 hour flight (like a rock star) from Georgia to California! She will have some lab work, we will meet with the doctor and explore the facility. Our discussions will include the following:
- Future chemotherapy
- Autologous vs Allogeneic stem cell transplant - most likely Allogeneic. More about this in another most. Auto is from your own stem cells; Allo is from another person's stem cells
- CNS Prophylaxis
- Treatment at a local hospital in partnership with City of Hope
- Complete Blood Counts
Wish us luck! Thank you for all the support thus far.We will get there a little early and hopefully get to explore some of their beautiful healing gardens! Here's to a healthy mind, spirit and body!
T-Cell Therapy to fight Acute Lymphoblastic Leukemia
Several weeks ago, I was sent an article about T Cell Therapy for the treatment of Acute Lymphoblastic Leukemia (ALL). Coincidently, City of Hope, my mom's new center, was also at the forefront of testing this type of therapy! I was very excited to see this interview. Below is a blurb about this new form of therapy:The experimental treatment involves isolating infection-fighting T cells from the bloodstream, genetically altering them with a disabled virus, then re-injecting the cells into the body. The virus essentially reprograms the T cells to recognize and attack cancer cells. Unlike traditional chemotherapy, which kills both healthy and harmful cells, this new technology allows the immune system to seek out and destroy cancer cells, without damaging the body’s healthy cells.Here is a direct link to the interview with the CEO of City of Hope, Dr. Michael Friedman:http://www.thedoctorstv.com/main/content/T_Cell_TherapyWe will talk to our doctor today about treatment types. It will probably NOT be this new T Cell Therapy, but it was very exciting to me to learn that my mom's new cancer home is at the forefront of ALL treatment!
Sally the Adventure Dog
Sally flew to California to live with my aunt a few weeks before my mom was discharged. When we arrived Wednesday, we were excited to be greeted by Sally. However, when we arrived, we realized that right after taking a bath and not having a collar, Sally decided to sneak out and go on a tour of her new California neighborhood! Maybe she's having a mid-life crisis. Since pets are known to leave their new homes for their old homes, we were a little concerned. We checked local shelters and put up signs. The next morning, a neighbor called and said he picked her up after he saw her crossing the street, braving the traffic and hanging out at a house that wasn't hers. Turns out she just felt like going on a little unannounced adventure.
California!
So much has happened! September 3rd, 2013 marks my mom's 25th day in the hospital. It was also the day of her official discharge! Once we heard the discharge news, I booked a flight the next morning to Los Angeles. I learned something new about last minute flights: The costs of economy and business elite converge! Plus, the 8:30am flight from Atlanta to Los Angeles was on their new Boeing 777-200 planes had flat-bed sleeps. That meant Mama Pham had a very relaxing 4 hour trip from west to east! Delta and United launched their flat-bed planes very recently for long distance domestic flights, so if you are lucky to be on a flight with those beds, it may be worth upgrading, especially if the price difference is not great. Everyone on the airport journey was great. Hanging out with the 8:30am business group, my mom rocked hat, hospital socks and flip flops. The Delta crew was fantastic and she had a very pleasant trip out west.Our appointment with her new doctor and facility at City of Hope is 11:30 am Pacific on Friday, September 6th!
Day 20, Labor Day, Release News!
Great news this morning! The doctor came in with her Complete Blood Count results:
- White Blood Cell: 5.0
- Platelets: 117
- Hemoglobin: 9.2
This means that she can be released tomorrow! Her counts are up to the levels of a healthy person. She is right on track with the chemotherapy schedule. Her counts actually recovered about 2 days early. Now it is time to transfer to City of Hope for treatment! More to come soon. Time to celebrate this first win in the fight against cancer. Here's to many more victories in the future!
Day 16 of Chemotherapy: WBC 0.6 billion cells / liter
Nadir is supposed to happen Day 10 -14 of chemotherapy. Since it is Day 16 and my mom's white blood cell count went from 0.4 to 0.6, it appears that she is on track! We just need that number to jump to 5! That would be 5,000 white blood cells per liter of blood. Once it reaches 5, we can hop on a plane to California where she will be admitted to City of Hope's Division of Hematology, a fantastic cancer center that focuses on Acute Lymphoblastic Leukemia. We have already registered at City of Hope, so now we just need our discharge papers. Go bone marrow, go! Do your thing.
Blood Pressure: Manual vs. Automatic
The automatic blood pressure machine has been giving extremely low readings so one of the nurses brought in an "old school" manual pump. They blame the inaccuracy on the fact that my mom has a very slim arm and the cuff is too big for her. My mom's blood pressure reading has ranged from 77/48 to 110/60 in just one sitting, depending on who does the reading and which machine she uses. This seems quite arbitrary to me. Though I have always been wary of the nurse squeezing my arm tight with a cuff then relying on her counting to determine my blood pressure. What if her mind wanders? What if she blanks out for a few seconds? Does she just make up numbers? It doesn't help to Google these questions because the internet is full of articles about how most blood pressure readings are wrong, how people's BP spike when medical personnel walk into the room and how cuff sizes really do affect your BP reading. Thanks, internet.The nurses and techs measure my mom's vitals every 2 hours since at this point of her neutropenic state (<0.4 WBC count), she is at high risk for infection, which can also lead to sepsis. Indications of sepsis include high fever and low blood pressure. If her temperature ever reaches 100F, we need to take action! Therefore, she gets a visit from the Patient Care Tech (PCT) every two hours for her temperature and blood pressure readings. Since she is a neutropenic, they also leave her own machines in the room so they are not shared with everyone else on the hall. Below are the two machines. I think they make quite the cute cross generation couple.
Left: Manual Blood Pressure Machine, Right: Automatic Blood Pressure, Oxygen, Temperature Machine
Hydration! 8 Glass of Water a Day!
Since my mom was doing well, they removed her the saline solution drip. This means she needs to hydrate! I have plenty of water for her in her room. She slacked on drinking water one day and her blood pressure immediately dropped and she had to get back on the saline solution! So now she is back to chugging water. She has bottles of Smart Water in her room since Smart Water is easier for her to drink. She has the 50 fl oz bottles in her room so we'll just need to make sure she drinks about 1.5 bottles a day. Silly mom. Stay hydrated!
Google Hangout! Across generations and Across the World!
Yesterday, in an ongoing effort to find ways to keep my mom's spirits high, I emailed all the cousins to try and set up a Google Hangout with some of our relatives around the world. We set up a Hangout for August 25th, 2013 4:30PT/6:30Central/7:30pmET/6:30am ICT. My Grandma has 10 living children and probably more than 80+ grandkids and great grandkids. Once the word got out that we wanted to do a Hangout, everyone wanted to join. The call lasted more than 2.5 hours and despite our hospital door being closed and pretty sound proof, I bet the nurses were wondering why they kept hearing a chorus of Vietnamese people yelling from our room. If you have never used Google Hangout, one cool feature is that it recognizes who is talking and highlights their face on the center screen. This probably works amazingly well with normal people. With a group of Vietnamese aunts and uncles who are all happily and excitedly yelling, it was quite hilarious to see Google Hangout try and keep up with us. Below is an awesome photo my brother snapped of what happened. He also wrote a little blurb about our grandma.Grandma Pham:-4'8" Vietnamese lady-1945: Survived Japanese oppression in Vietnam-1975: Survived the Vietnam War-Somewhere in between had 13 kids, 3 of which suffered sudden infant death syndrome.-5 of which successfully became refugees and escaped to 'Murica.-Has 70+ kids and grandkids (prob 80+ whose counting)-2013: Uses Google Hangout with headphones to talk to all 5 kids and the grandkids in the states.
Day 11 of Chemo: Last does of Vincristine!
Today, my mom receives her last dose of chemotherapy for this first cycle. We are on Day 11 and the drug is called Vincristine (brand name = Oncovin). It is given intravenously through her picc (peripherally inserted central catheter) line. Her Complete Blood Counts (CBC) are as follow:
- White Blood Cells: 0.3, severe neutropenic, high risk of infection. Normal is 5.0-10.0 in healthy adults.
- Hemoglobin: 9.2, no need for transfusion! Normal is at least 12 for women.
- Platelets: 58. Normal is 150-400. Concerning is below 20. She is low, but not at the concerning level.
The WBC count is what we are watching the most. It needs to get above 5 for the doctor to let her get on the plane and above 2 for me to stop worrying about random visitors! More about neutropenia and white blood cell counts here.Here's to a restful night.
Neutropenia, Nadir and Risks for Infection and Sepsis
I have read much about a neutropenic diet, nadir and infection in the past several days. My mom is currently classified as a severe neutropenic, which means she is at high risk of infection. Some definitions below.NeutropenicSomeone who is neutropenic has low levels of neutrophils. Neutrophils are the most dominant type of white blood cells. Levels of neutropenia are classified by the number of Absolute Neutrophil Count (ANC). The ANC is measured in cells/microliter of blood. Below are the classifications from Wikipedia:
- Mild neutropenia (1000 ≤ ANC < 1500) — minimal risk of infection
- Moderate neutropenia (500 ≤ ANC < 1000) — moderate risk of infection
- Severe neutropenia (ANC < 500) — severe risk of infection.
My mom is currently at severe neutropenia, with ANC < 400. Using different units, sometimes this is also referred to as 0.4, instead of 400. Where WBC count is 0.4, so the neutrophil count is even less than that!NadirNadir simply means the lowest point of something. In Chemotherapy, the red blood cells, white blood cells and platelets all have their own nadir periods. The white blood cell nadir period is critical because this is when the body is most prone to infection. My mom is current in her nadir period and it may last for another 10 days. We are on Day 10 of Chemotherapy. Her white blood cell count may not get back up to acceptable until Day 20. During nadir, we must be extra cautious. This means keeping a watchful eye on what she eats and making sure her nurses understand this as well. Surprisingly, not all of my mom's nurses are aware of her severe neutropenic state. This is quite unfortunate.Infections and SepsisNeutropenia and nadir simply means that she is at great risk for infection. Infection can lead to sepsis. We have to keep an eye on her temperature, blood pressure and urination frequency in the next 10 days. Basically, her body's army is gone and we home no little terrors come along during this time! We can only do as much as we can to keep infection out of the room and away from her. One of the ways to keep infection away is to stay on a strict neutropenic diet. This basically means avoiding any fresh foods of any kinds. This includes fresh fruits, veggies, nuts, raw spices, soft serve and anything that might foster bacteria of any kind. Here is a pretty good chart from a surviving Leukemia blog with foods that we should allow and avoid. The Leukemia and Lymphoma website also has a succinct description of foods we should avoid:
- Avoid all uncooked vegetables and most uncooked fruits. You may eat fruit that you can peel a thick skin off of, such as a banana or an orange. Cooked vegetables and canned fruits and juices are safe to eat.
- Avoid raw or rare meat and fish and uncooked or undercooked eggs. Cook meat until it's well-done. Thoroughly cook eggs (no runny yolks).
- Avoid salad bars and deli counters. Buy vacuum-packed lunch meats instead of freshly sliced meats.
- Consume only pasteurized milk, yogurt, cheese and other dairy products.
- Avoid soft mold-ripened and blue-veined cheeses such as Brie, Camembert, Roquefort, Stilton, Gorgonzola and Bleu.
- Avoid well water or boil it for one minute before drinking. At home, it's okay to drink tap water or bottled water.
So here's to the next 10 HEALTHY, INFECTION-FREE days! Go Team Mama Pham!
Language Barriers - English, Vietnamese, Medical
I am learning the intersection of three languages: English, Vietnamese and Medical! When I am at the hospital, I often translate for my mom. When I am not around, I imagine a lot of hand gestures and repeating happens. I'm sure she and the nurses have developed a special language. I would say my Vietnamese is intermediate - enough to read and write (maybe even create a poem), but most certainly not enough to translate all medical terms. Therefore, the past few days, I have spent looking up various medical terms in Vietnamese. Below are some key terms that have helped with translation for my mom and relatives:
- red blood cells: hồng huyết cầu
- white blood cells: bạch cầu
- plasma: huyết tương
- platelets: tiểu cầu
- cells: tế bào
- cancer: ung thư
I found the following two websites quite useful:
Cytogenetics, Chromosome 11, Mixed-Lineage Leukemia (MLL)
Today, Dr. Lewis talked to us about my mom's cytogenetics results. I will try to describe this in a accurate way, but please keep in mind that my road to learning the language of Cancer is still relatively new. I also need to brush up on some high school and college biology classes!She has abnormalities in Chromosome 11. The results say:Abnormal female karyotype with a deletion in the q-arm* of chromosome 11 in 4/5 metaphase cells available analyzed. These abnormal cells also had additional non-clonal abnormalities.The remaining 1/5 cell showed a 46,XX karyotype.Submission of a follow-up specimen to monitor karyotypic evolution should be considered as clinically indicated. Karyotypic evolution often precedes disease progression. *I read that q-arm = long-armThis basically means that she is high risk. The abnormalities of Chromosome 11 affects the Mixed Lineage Leukemia (MLL) gene. The possibility of a stem-cell transplant is quite high at the moment. There is much to learn about cytogenetics and I will be updating this post as I learn more.I found this article about Chromosome 11 and MLL.
Leukine, you troublemaker
This morning, during Dr. Lewis' daily checks, he informed us that he found some blasts in her blood smear. Blasts are immature white blood cells that should not be found in the circulating blood. He mentioned this might be due to the Leukine injections in her stomach, which assist with the production of white blood cells to help maintain a level that can better fight infection. I previously wrote about Leukine here. Since the Leukine might be causing problems with blasts, he has stopped the Leukine injections. For us, this means we will need to continue to be fastidious about what she eats, who she sees and what she touches so she does not get sick.
This means not allowing just anyone to visit. Yesterday, one of her previous co-workers decided to stop by and despite all of her objections, brought a bag of overly-ripe bananas and home-made cold foods. Ain't nobody got time for that.
It is Summer. Less Hair is Better!
The oncologist is certain that my mom will lose her hair around day 10-14 of the hyper-CVAD treatment. I have scourged the internet for ways to deal with hair loss, types of wigs and types of head coverings. My mom and I have talked about this and we will probably cut her hair short before all this happens. We may consider shaving, but have not had that discussion yet. The internet is filled with opinions ranging from shaving it all off to leaving it long and letting it fall out at will.To prepare, I have ordered two beautiful hats that will cover her head. I have also visited the local Savannah American Cancer Society for support and they gave me a free wig for my mom! The National American Cancer Society receives wigs from Pantene (the hair products company) and sends them to the local chapters. It really was a joy to visit the local Savannah American Cancer Society, discuss hair loss and bring home a beautiful wig for my mom. Thanks, Pantene! We may also buy wigs one day and have them styled, but for now, it was a huge blessing to have a place to go that understands cancer and was able to empathize while I showed them photos of my mom and we picked a wig together since my mom could not physically be there. She has said multiple times she doesn't think she will need a wig and a hat will be fine, but it is better to stay prepared in case she changes her mind. I have never gone through hair loss so I have no idea how that can feel.Pictures soon to come.